Many people have medical horror stories, those medical experiences that leave a lasting negative impression on you that are too hard to believe you experienced. I’ve heard the stories of medical mistakes and misdiagnosis. There are discussions occurring around the country on health care reform because of some of those stories and because our current health care system is definitely imperfect. I thought I would throw a few of my personal experiences out there in the mix; maybe it will help the discussions.
My daughter with Cystic Fibrosis was misdiagnosed as having chronic pneumonia, chronic bronchitis, chronic bronchialitis, failure to thrive, and a host of other guesses before she was three and a half years old. No one ever mentioned Cystic Fibrosis to us and we had never heard of it until we moved to NC and we were fortunate enough to find a doctor that questioned her previous diagnosis and history. By then, the disease had already damaged her lungs and we have struggled to improve her health for the last ten years.
I knew I had pneumonia, all of the symptoms were there and it was not my first experience with it. I went to the hospital emergency room; an ER Attending Physician disagreed with me and tried to tell me I was having a panic attack. I had to demand to have my x-rays brought in and shown to me so I could point out the areas of my lungs on the x-ray that showed pneumonia. The physicians response was to say, “oh yeah, your right, you do have pneumonia, I guess you need antibiotics!”.
My daughter was hospitalized for complications of Cystic Fibrosis and severe infection. They wanted to give her Penicillin for the first time ever, I warned them that I am allergic to Penicillin and I was concerned that she may be. They said that allergies are not inherited, waited until I left the room and then gave her Penicillin. She immediately developed severe hives, her problems breathing worsened, and she definitely had a severe allergic reaction. It took me 12 hours later and three doctors to convince them that it was a reaction to something and to stop the drug. They still refuse to admit that she had an allergic reaction to the drug.
My son had a sudden paralysis on one side of his face. We rushed him into the pediatrician and from there into the hospital. We kept telling the pediatrician that we thought it was related to CF but he was adamant that there is no way it could be. After borrowing a hospital computer for a night while he slept in the hospital bed, doing extensive online research to anything that could cause facial paralysis, I found the answer. It was Bells Palsy which can be caused by a lack of vitamin K which can be directly linked to CF. The next day, after refusing to see the attending and demanding his boss, we finally obtained agreement to have Vitamin K supplements given to our son. The facial paralysis was gone within three days of receiving Vitamin K supplements.
When I had my youngest son, the doctor was not available so the resident delivered him. The resident didn’t want to wait for the placenta so she pulled which tore me. I immediately knew that she did something wrong, I told her that I wasn’t feeling right, that something went wrong. She looked at me and said, “Oh crap, your hemorrhaging!” It took a transfusion of 17 pints of other people’s blood and multiple shots of heparin to stop it.
I went into the hospital emergency room with symptoms of severe (close to hypothermic) temperature decrease in my legs, loss of mobility, inability to move my legs, and severe pain in my legs. The attending physician immediately told me that I was pregnant and pregnancy caused all sorts of weird symptoms. I explained to him that I have had five children, that he was absolutely wrong, I wasn’t pregnant and pregnancy does not cause my symptoms. I filed a complaint against him. He called me the next day at home and apologized saying he got my file mixed up with another patients file.
That same physician tried to force me to be hospitalized. I explained to him that I have four children with special health care needs, three of them have CF, and I have no assistance besides my husband in caring for my children, and that I am uninsured and can’t afford to be hospitalized. He notated in my medical records that I “supposedly do not have assistance in raising my children and refuse to obtain assistance or will not seek assistance from family or friends” and “patient has refused medical advice”. He didn’t listen to me, he made it sound like he didn’t believe me and I was just being uncooperative.
I had an epidural; the doctor administering the epidural inserted it in the wrong place. The nurse that was assisting him pointed out his mistake, he remarked a little too casually, “oops”, and tried again.
I had an IV line catheter inserted in my arm; I laid on the table spouting blood all over the floor before the nurse realized that she had inserted it incorrectly into a main artery.
I had to have blood work drawn but the lab techs were too busy shopping online for shoes to notice I was there and then acted like I was a huge inconvenience for interrupting them.
I went in for x-rays of my legs and back. I’m in a wheelchair, I can’t move my legs, and my chart is in the hands of the x-ray technician. The x-ray technician looks at me, tells me that I have to get out of my wheelchair and walk over to the table and lay down. I told her that if I could move my legs and walk then I would not be in a wheelchair. She replied that I had to move or she couldn’t do the x-ray. I told her that she would have to lift me onto the table, she said that she couldn’t. I told her that she would have to get a portable x-ray machine then and place me next to the back board in my wheelchair and she could do the x-ray on my legs by placing them on a chair and using the portable x-ray. She agreed then told me that I had to lift my legs onto the chair. I had to reiterate to her that if I could move my legs then I wouldn’t be sitting in a wheelchair.
I saw a vascular specialist for my legs. All previous doctors had difficulty in finding a pulse in my legs so they suspected that my condition may be caused by a blood clot. The Vascular specialist resident took his time and couldn’t find a pulse in my legs. He brought his boss into the room. His boss was able to locate a pulse by putting extreme pressure against my legs, he said there was nothing wrong with my veins or arteries and that there was nothing that he could do. He took just a few minutes with me before making that determination. He turned to my husband and spoke to him about me as if I wasn’t even in the room. He spent the next 20 minutes trying to explain himself to my husband.
I had a spinal pain block procedure. They told me that they would numb the area, I would feel a slight prick and that was it. They lied, it hurt unbelievably badly. During the procedure, my blood pressure plummeted, my heart rate fell, my breathing became labored, I felt myself losing consciousness, and I heard them asking me questions but couldn’t respond. The doctor realized that I was in distress and ordered a nurse to give me oxygen and an IV. The last thing I heard was, “she’s crashing”. I came to some time later, was told that I scared them, and then was sent home. The pain block didn’t work, I was sick for days afterwards and the condition that prompted the pain block definitely got worse.
I obtained my medical records. I was surprised at the number of errors. It wasn’t just spelling errors but simple facts such as my name, my address, details on my history, and more. These are errors that could affect patients’ insurance coverage, future treatment, or future diagnosis. I tried to get the errors corrected and was told that only the physician who made the medical entry could correct the mistakes.
Those are just a few of my horror stories. I’m not saying that all medical professionals are bad or that they all make mistakes. We are all human, after all, and we all make mistakes. But in my experiences, there is very little accountability and little to no recourse when a mistake is made. Yes, doctors pay very high malpractice premiums but most patients can’t do anything when a mistake is made. There should be a bit more accountability, there should be more transparency, there should be more honesty, there should be more cultural competency, and there should be more of an effort made to develop a patient professional relationship. I have seen far too many that want to give a quick answer to the patient and get out the door. There should be more oversight from resident’s supervisors.
One of these days, before it is too late hopefully, we will have health care reform and an affordable quality national health care plan and I will be able to get that definitive official diagnosis and get something done.
Again, no offense to any medical professionals out there. These are just my experiences to throw in the mix of the many that already exist out there.